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:banghead:

Thanks for sharing your experience. I’m sorry the impact lasted such a long time.

If you’re too sick it isn’t a preference it is the only option available.

That’s normal practice to be fair when you’re getting a lot of correspondence on the same topic, a good sign that many are writing in.

Nath response wording also posted on the letter thread https://www.s4me.info/threads/letters-to-nih-director-bertagnolli-about-the-intramural-me-cfs-study.37364/#post-517816

Thanks for the summary @Simon M & thanks all those digging into the details

Wow that is positive. I think/hope a lot of PWME using the opportunity to share info with healthies.

Sorry I forgot to look at the pack when upstairs I will try to remember to check this evening.

I have a larger face and that results in a pretty good fit for ffp2 even with ear loops (which I prefer)

We should put these guys in a room with the Polish team that use cold therapy.

Does it cover her conflicts of interest? - presuming this is “research” as marketing

Functional capacity is the outcome of PEM

The wording was not as clear cut as yours. May not be particularly effective (or something on those lines) was what registered with me which unfortunately still leaves the door slightly ajar.

Thanks @Joan Crawford ive added Chester to the signatory list.

Had to search the blurb to find the date reasonable timeframe- 30 April

Hi @Joan Crawford. We did contact a lot of UK groups through ME Local which is included in signatory list not sure if that includes Chester? But we’ve also got groups that signed up in their own name. Happy to add Chester to the list based on your request nothing further needed.

AFME looking for up to 3 Trustees https://m.facebook.com/story.php?story_fbid=pfbid029maC7L8DJBm4b4gPn1RuMRyMUe19bsn6DoGahvh2dvVWwpVPmhjLCTMBe4pHA6Lpl&id=100064839214273 https://www.actionforme.org.uk/get-information/about-us/work-or-volunteer-with-us/

What points is she making?

▶️ Watch this video https://www.facebook.com/share/v/XLCjjrteGGX6BQRf/?mibextid=WC7FNe Video from Carol Monaghan MP feeding back on the APPG meeting this week including signing up to the open letter to Cochrane

I read this as ones so obvious you can’t miss (like shooting at a barn door)